The Condition

“Myopathy” means “muscle disease” and a biopsy of muscle from a person with nemaline rod myopathy shows abnormal thread-like rods, called nemaline bodies, in the muscle cells. People with nemaline myopathy usually experience delayed motor development and weakness in the arm, leg, trunk, throat and face muscles.

The disorder is often clinically categorised into several groups, including mild (typical), intermediate, severe, and adult-onset; however, these distinctions are somewhat ambiguous, as the categories frequently overlap. Respiratory problems are a primary concern for people with all forms of nemaline myopathy, and though in some severe cases they may threaten life expectancy, aggressive and proactive care allows most individuals to survive and lead active lives.

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My Weak Muscles

Here you've found the journey of an inspirational little lady called Rosie who struggles with ordinary everyday activities like sitting, eating, walking and smiling due to a severe muscle weakness disorder. What she lacks in physical strength she sure makes up for in mind and spirit. She is a real warrior facing every day challenges with grace and humour.